The Valentine None of Us Wanted

We received a call from the oncologist bright and early the morning of February 14, 2020. It was the Valentine none of us wanted, news that my husband’s bilirubin had gone up by more than a full point instead of continuing to go down like we needed it to. This news disqualified him from the clinical trial we were supposed to start in Nashville six weeks prior. This news also disqualified my husband from all trials and treatments for metastatic uveal melanoma available anywhere.

“I’m worried we could be coming close to the end. Our choices are looking pretty limited right now,” uttered the doctor with a tad of sadness in his voice.

“We’re talking about a hospice decision then, I think,” my husband replied.

“I think we are,” said the doctor.

We grieved amongst ourselves, shared the news with my husband’s parents who had arrived nine days prior to help us out, then called my mom and dad before the kids came home to a hunt for 72-piece boxes of Russel Stover chocolates my husband had bought weeks ago so they would never forget this Valentine’s Day. We let our two teenagers go on their dates without any worry the bad news would bring. Then we enjoyed pot stickers from a local sushi restaurant, a heart-shaped bake-at-home pizza, and “Chances Are” with my in-laws in the comfort of our living room. It wasn’t the romantic end-of-life, last Valentine’s Day date you’d imagine with your husband, but it was simply and realistically romantic nonetheless.

The next day, we had to tell the kids. Ugh. The conversation NOBODY wants to ever have with kids under 18, all still living at home. Dad’s labs went up again. We are out of treatment options. Dad is going to be going to heaven to be with Jesus soon. Crying. Crying. More crying. This is so incredibly sad, so incredibly painful, something I never, ever want to do again until I am at LEAST 75 years of age, please and thank you, Jesus.

It was then time to share with siblings and our very closest of friends. We gave our parents permission to share with aunts, uncles, cousins and long-time friends who are like family. Within hours, my mom scheduled a one-way flight to Seattle, and my brother-in-law and sister-in-law had scheduled flights for a 4-day visit as well. Four days later, we made the news public – to almost everyone else we’ve ever known – through a post on Facebook drafted by my husband.

One palliative care appointment and one Cancer Support Group later, I found myself in Whole Foods on the phone with the oncologist, verifying that YES indeed, there are NO trial or treatment options left, that EVEN IF my husband’s labs miraculously came down into normal range, his body wouldn’t be strong enough to withstand the side effects of trials and treatments. I asked him twice, just to be sure I heard it right, just to be sure I understood that is EXACTLY what he meant, thanked him for being honest and supportive, and verified that YES, we will be moving forward with hospice.

It’s been a whirlwind of 13 days since we received the Valentine none of us wanted.

13 days and we’ve already met with the hospice intake nurse, head nurse and head social worker assigned to our case.

13 days and I’ve already made two emergency calls to the nurse needing recommendations about how to best increase my husband’s pain medications.

13 days and I’ve already spoken at length with Safe Crossings, an organization dedicated to providing pre-bereavement and bereavement services for children.

13 days and the hospice chaplain called.

13 days and we’ve already had a brother-in-law and sister-in-law here for a four-day visit, one set of parents flew out but will undoubtedly be flying back in, another parent flew in, a friend is flying in, and the other brother is flying in for a three-day visit with his girlfriend.

13 days and I have 72 heartfelt texts and a countless number of Facebook messages I probably won’t get to for weeks.

13 days and I have lovely folks offering meals even though I haven’t even requested any.

13 days and nine playdates from nine different families for our youngest.

13 days and a teen texting big questions about what’s going to happen.

13 days and the other teen stepping up to the plate, popping in bedside and couchside to ask how things are going, how are you feeling?

13 days and I wish I could explain how I feel. I wish I could wrap my mind around everything. I wish there was time to process this slower, to experience this more richly, in a timeline that matches the speed of my heart and soul. But life and death don’t always follow the perfect pace of our heart and soul, so I’ll catch up someday. I’ll burst, I just know it. The time will be wrong, but it’ll be oh so right. For now, I face each day bravely, as is. Getting pain meds. Getting morning meds. Bringing fresh water with lots of ice. Bringing another chair to our bedroom so we can all watch TV bedside instead of couchside. Sitting on the chair and chatting while my husband tries to eat a little lunch lying down. Sorting through pictures. Taking pictures of pictures. Sending requests for more pictures. Doing finances, canceling credit cards, verifying beneficiaries and bank accounts, making sure all of my licenses are set up and ready to go for plan A and plan B. Meeting with the funeral director. Arranging playdates. Asking for rides. Scheduling the pedicure our teen requested with her daddy. Bothering my husband (again) about finishing his legacy letters for the kids. Tickling him tenderly when he needs it. Taking time to hold his hand and just look at him and feel him next to me. Texting a friend to buy me another 4 waterproof pillowcases, putting them on top of the waterproof pillowcases I already have on the pillows, then taking them all off again when they’re sweaty all the way down to the pillow, then washing them and putting them all back on again once a day, every day, times four pillows. Dealing with daily junk I despise at such a time as this, like phone calls to insurance to get reimbursed for a dealer visit to fix wipers that weren’t fixed properly after our windshield was replaced two months ago, and second grade Eureka math that isn’t-so-eureka to try and explain and why in the world can’t we just put these numbers in columns and add ’em up instead of making this a five-step process? Trying to breathe, fitting in walks or hikes here and there, going to once-a-week grief counseling appointments, attending bi-weekly art therapy support groups, drawing boundaries, knowing what I can and can’t do, and working hard to blow it off when I sense other people judging the way the kids and I do life. Remembering that God is still here, even when it’s so loud, so busy, way too fast and and SO incredibly hard to believe. Believing that I am beloved, that my children are loved, that my husband is loved, even when it feels like we’ve been assigned to a rare, incredibly abnormal life while the rest of the world gets to go on with normal life. Trusting that God will take care of his son, that we will take good care of our husband, our dad, as we walk him home to heaven. Knowing and resting in every truth. Breathing. Breathing once again.

Hallelujah, this is the Valentine NONE of us wanted. But we will do this. We have done this. We will continue to do this. We will make it through hard things and heavy things and we will all receive healing in due time. Good things will come of this. Good things will come. This is not the end, no. This is not the end. We believe this is not the end.

  1. Kate Egan says:

    Praying for your beautiful family. 

  2. Jessica says:

    This life is not for the faint of heart my sweet friend ❤️  Please never ever stop writhing.  This world needs your gift.  All my love to you and yours ❤️

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